I just got home from speaking to an amazing service organization - The Optimist Club. Like their name suggests, the group was chock full of positive energy. After speaking, they presented me with a certificate and a coffee mug with their creed printed on it.
I think this will be my new creed. I wanted to share with you, too! These principles are at the core of Girl Power 2 Cure and everyone who works with us. We are so thankful to all of the people we have met on this journey. You all add to our collective inspiration to look Rett Syndrome in the eye and still be optimistic.
Now here is some girl power in this photo. You have heard us speak about the Daltons many times. They are really such an amazing family. Rachel (on the right) is 14. She is using the power of words in her family's fight against Rett Syndrome. Her younger cousin Emma (in her arms) has Rett Syndrome.
Rachel has been making and selling bracelets to raise money for research. I came across her "Note to the Monster" on her blog yesterday. The power of her words is so strong.
To the monster- the mayhem- that's hit our family like a tornado hits a little Kansas town.
to the evil-the horrible- that thinks it can get our spirits down. well FYI? it doesn't work. to you rett syndrome, yes you.
while you bring us wheelchairs and hospitals and worries galore you also bring us a strength we never thought possible. when you bring is seizures and sleepless nights and tears beyond the norm you also bring us a bond so tight nothing can come between it.
to you rett syndrome.
the robber who takes the muscles of the little girl. you think you'll break us this time with the chair and the wheels but you haven't. try again.
the thief who stole her words. you think were in your trap with the nonverbal pain and unexplained sadness but you don't. well just keep fighting.
to the selfish one who gives her seizures and pain just to watch her struggle to eat, drink, breathe. live. I dare you to sit there and watch as we fight for her. because you're just adding fuel to the fire my dear rett syndrome. and that's a bad idea.
we are a family that fights together. a love that never ends. a strength that doesn't give up. a hope that doesn't stop. not ever.
Not even when our dreams are shattered like glass. Or our when our worst fears are coming true.
so I dare you to sit there and watch while we work to rid of you. to end the struggles and suffering. not only for our little girl but for the thousands of others out there. ao that next time she can look in the face of another child and say 'i got through the bad and I know you will too'.
so that some day shell have a chance to run though sprinklers or yell at her mom. so that shell have a chance one day to let her guard down. to stop being strong.
you just wait rett syndrome because a day will come when those scientists look at you with a sparkle in their eye and say "take THAT you horrible disease!". someday someone will receive a diagnosis of rett syndrome for their daughter and breathe a sigh if relief because you will be the disease with a cure. and as for those girls you've caused pain and suffering? they'll become advocates for the others in their situation. they'll hold seminars and tell everyone of the horrors you caused them to be trapped in their bodies. you'll become extinct and never cause another innocent girl any pain. Ever.
I guarantee that someday you rett syndrome wont even have a grip on those scissors youve been using to cut chromosomes.
so take that rett syndrome because after everything weve been though were still glowing with hope like the sun.
you won't take her. break her.
you won't shake us or shame us because the tables turned rett syndrome.
In the words of one of our new Board Members, Pam Maxwell:
Shortly after joining the Girl Power 2 Cure Board of Directors, I was scheduled to attend our first evening board meeting in August. This was being done via conference call and, as a working Mom, my kids are very used to me taking calls and working at home. But having a “work” call at night is unusual so they were asking me why I was working at night.
As we drove home that evening from dinner, we had a conversation about my joining this board, what Rett Syndrome is and what the non-profit organization and those who join the board do to help. We got home just before 8:30 pm and I went right into the office, instructing my 6-year-old daughter, Ava, and 8-year-old son, Alex to go play and give Mommy some quiet time.
I dialed into the conference call and was waiting for the others to join, when...
Ava came into the office with her piggybank and proceeded to dump its entire contents onto the floor, asking me for a plastic bag into which she could put all the change. She said, “Mama, I want you to give this to those people who help the girls.”
I explained she didn’t have to give all her money but she said, “It’s not fair that they can’t talk and play.” I gave her a big hug and said of course, that I would take it with me when I went to Washington DC for the big gala party.
At the board meeting in DC, we dumped the money onto the table and counted it out. Our board consultant was so excited about Ava’s giving nature that she wrote a little note to Ava thanking her for her generosity and said she would match Ava’s contribution. Then I said I would also match it as did Laura Labatte, GP2C board treasurer. Laura counted out the money – $6.65 all in change.
With all the “matching” donations (most were for more) we raised $143.65 for Girl Power 2 Cure in a matter of minutes. All that from a simple act of kindness by a 6-year old who just wanted to help.
What an amazing month of awareness! People are painting their toenails purple, putting purple lightbulbs in their front porch lights, AND painting the windows on their vans -- just to name a few!
There are TV spots, Radio ads, and newspaper articles. Rett Families are shouting from the rooftops.
I want to share one of the radio spots with you. It is the voice of Dana Marie, a Canadian recording artist. She wrote a song, I'll Fly, for a little girl, Anna, that she knows with Rett Syndrome. A brief story about the song recently aired on 94.2 Faith FM.
Love what you hear and want to get the song? We have it available for download and half the proceeds benefit Girl Power 2 Cure.
OK - so it isn't Friday yet! But you will need time to get ready for this week's book recommendation. It's one of those can't-put-it-down ones that will leave you feeling ready for battle for anything!
This book was made into a movie starring Harrison Ford called "Extraordinary Measures."
The author of this book is an extraordinary man and father. If we could all just fight a fraction of the battle he waged, we would really get somewhere.
John Crowley is a role model for me. I strive to take on my nook of the world with the same relentless spirit as he does for his children. We all have it in us to push the boundaries and make change.
I had the pleasure of spending some time with John discussing his journey and giving him a glimpse into the Rett Syndrome world. He continues to fight for ALL rare disorders and I hope our paths will cross again!
In Keeping Katherine: A Mother's Journey to Acceptance Susan Zimmermann tells the story of her life with her daughter Katherine, who has Rett syndrome, a devastating neurological disorder. Writing with honesty and candor, Zimmermann chronicles her personal journey to accept the changed dynamic of her family; the strain of caring for a special needs child and the pressure it placed on her marriage, career, and relationship with her parents; the dilemma of whether Kat would be better cared for in a group home; and most important, the altered reality of her daughter’s future.
A story of personal transformation that reminds us that it isn’t what happens to us that shapes our humanity, but how we react, Keeping Katherine shows the unconditional love that exists in families and the gifts the profoundly disabled can offer to those who try to understand them.
I found this book immediately following our diagnosis. To say it was a difficult read at that time would be an understatement. Every time I read, I ended up in tears. Wondering if this was our future. I stopped reading it at one point because I decided not knowing was better. But eventually I picked it back up because I had to know what happened. I’m so glad I did. After reading it, we passed it on to several of our close family members. I was a little afraid, knowing how I had felt about it, but I think it gave everyone a really honest look at what we would be facing without me having to say it. -- Kristy Brooks
Before June (Effective Communication Month) is over, I want to squeeze in a post on the topic. Most people think the top priority for a girl with multiple handicaps would be to walk, but communication is what really tops the list. Effective communication that is.... Girls with Rett Syndrome are very good at communicating the basics: "something's wrong!" "something's great!" and "this is really really boring."
But how do people around them understand exactly what is wrong, great, or boring? How do Rett Girls go further to express a sense of humor, a dream, an idea, an observation?
Technology will be the key. And luckily that is moving at a fast pace. But the educational teams assigned to work with these girls are slow to keep up in many instances.
Nineteen years ago, theNJC (National Joint Committee for the Communication Needs of Persons with Severe Disabilities) published a Communications Bill of Rights. 1992 is a long time ago - we still need a lot of work in this area.
To share the words of our very own Kelly Butler whose daughter Brooklyn has Rett Syndrome:
I recently was made aware that there is actually a Communication Bill of Rights. As a mother of a disabled (non-verbal) daughter you would think I would have know about something like this. (Better late than never I guess!)
Anyway, as I began reading through the list I said to myself, "Everyone wants these things, I know I certainly do!" But then it hit me - and hit me HARD. Brooklyn doesn't always have these things....Rett Syndrome took them away from her. It is up to me to make sure she gets them back and keeps them, always.
Today as you make your choice for what you will have for lunch, take some Tylenol for that headache, go to the bathroom, talk to your friends, or even decide its time for bed - think about Brooklyn - and the millions of kids and adults that are non verbal and can't always make these choices for themselves and then be thankful. Very, Very thankful and maybe, just maybe - help fight for those who don't have these things - fight for them.
Communication Bill of Rights:All people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence. All people have the following specific communication rights in their daily interactions. These rights are summarized from the Communication Bill of Rights put forth in 1992 by the National Joint Committee for the Communication Needs of Persons with Severe Disabilities.
Each person has the right to: ■request desired objects, actions, events and people ■refuse undesired objects, actions, or events ■express personal preferences and feelings ■be offered choices and alternatives ■reject offered choices ■request and receive another person's attention and interaction ■ask for and receive information about changes in routine and environment ■receive intervention to improve communication skills ■receive a response to any communication, whether or not the responder can fulfill the request ■have access to AAC (augmentative and alternative communication) and other AT (assistive technology) services and devices at all times ■have AAC and other AT devices that function properly at all times ■be in environments that promote one's communication as a full partner with other people, including peers ■be spoken to with respect and courtesy ■be spoken to directly and not be spoken for or talked about in the third person while present ■have clear, meaningful and culturally and linguistically appropriate communications
From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting the communication needs of persons with severe disabilities. Asha, 34(Suppl. 7), 2–3
What is a community? According to the dictionary a community is “a social group of any size whose members reside in a specific locality, share government, and often have a common cultural and historical heritage.”
My eighth grade students often asked me why in the world I would come back to live in Saranac Lake. I tell them I too couldn’t wait to leave, to go where the action was, to live an exciting life in a big city. That was 20 years ago. 16 years ago I found my way home. Home to the hour drive to the mall, the one way streets, the town where I grew up.
You don’t realize when you are young just how amazing your home town can be. How extraordinary it is to go to the grocery store or post office and hear “Hi Jen!” Or “Hi Mrs. Dalton” ? People know you and your family. And then something devastating happens to someone and you watch that community spring into action. I’ve seen it happen time and time again – never imagining it would happen to me, but it did.
In September 2008, my daughter Emma was diagnosed with Rett Syndrome. We had heard the words before, but on that day it became a bittersweet word that would change our lives forever. Sweet because we finally had a name for the monster that was not allowing Emma to gain skills. Bitter for all of the other reasons – the implications that she was facing a long, uphill battle, and that the life we had dreamt about for her would be very different than we had thought.
Very shortly after, I became involved with Girl Power 2 Cure. At first it was a way to connect with people that were going through Rett Syndrome. They “got it” when no one else even knew what Rett Syndrome was. As part of the healing process - knowing that Rett Syndrome symptoms had been cured in Dr. Adrian Bird’s lab in Scotland - I threw myself into planning a benefit event. Being a music teacher and coming from a very arts centered community , I knew it had to be be musically related and thus, Rockin’ For Rett was born.
Our first Rockin’ for Rett event was held in October 2009. We had wonderful musicians from the community who donated their time to perform. Our community donated many amazing items for the slient auction. It was a great day and we raised awareness of a horrible condition people had never heard of. Very shortly after, people from the community began to ask me if we were going to do another benefit. We knew we needed to “tweak” the format and make it a more family friendly event and that is when our community sprang into action.
One day I had a thought as I went to visit my friend Jen Tucker. Her husband’s family owns a huge potato farm that has been operating since the 1860’s. Every year they plant the Great Adirondack Corn Maze. All of a sudden it made sense! Rockin’ for Rett 2.0 could be held at the farm. People could enjoy the Corn Maze. It would be great! The owners were very excited about the prospect of the event being held at the farm. Each year they design a different corn maze and because of their interest in Emma and in helping to find a cure for Rett Syndrome, they added the Girl Power 2 Cure Flower, Em’s name and Rett into the Maze. I think it was the largest Girl Power Flower to date!
It felt like our entire community helped with the event. From local businesses donating items for auction, to students volunteering at the event from the local honor societies, to young volunteers running the bake sale - we felt supported by everyone. Together that day we were able to raise $25,000! All from a town of less than 5,000 people. It was truly remarkable.
For us , community means family. Our families are the most amazing out there. They have been willing to get on this crazy ride with us and support us in any way they can. Not just in the planning of events. It is the every day life support that we will be forever grateful for. I am so thankful we have that support and love.
Rett Syndrome hasn’t been cured yet. The excitement of Girl Power 2 Cure, however has grown ten fold in our community. In April, my 9 year old daughter Sarah did a Pennies for Rett Drive at our school. Kids were arriving with coffee cans full of pennies. Sarah is currently at $420 and counting as pennies continue to arrive daily! Also in April, my nieces Rachel and Kelly , along with their friend Nathalie organized a Spaghetti Dinner in honor or Emma for Girl Power 2 cure. Along with their friends they secured donations from very generous businesses and people in our community and were able to raise over $2,000!
I have come to realize that community is so much more than the people who live and work in your town. They are the people who you call family. They are the people who teach your children. When someone is in need no matter how big or small, they are the people who arrive at your door, or call on the phone saying “What can we do to help?” In the words of Pope John II “...A community needs a soul if it is to become a true home for human beings. You, the people must give it this soul.”. My community has a soul.. That is why we call it home.
Why did we join Girl Power 2 Cure and why do we love them so much? Best to start from the beginning.
When we were first diagnosed, we read about the old-school literature of Stages I through IV of Rett Syndrome, which in a not-so-scientific nutshell discusses our daughters normal development, regression, stagnation of skills, and rapidly deteriorating stage until the unspoken happens.
Where was the hope in that? We first brought Anna home from the geneticist and were under the impression that Rett was a death sentence.
Hope and joy were hard to come by. Full disclosure: on Anna's hard days they still can be, but nothing is as black as those darkest days. There are days now that Spring has arrived that I am at the park with the kids and I see a healthy girl Anna's age running, talking, playing... And I think, "Only 1 gene separates my daughter from you." Sometimes I go back to throwing stones at them but other times I can get through it by telling myself their mothers are going to be jealous of me when their girls are 16 and off riding in cars with boys on Friday nights and Anna and me are having a movie night cuddled up on the couch. Ah yes, bargaining! Works every time.
When we found GP2C, the "girl power" confused me at first. I was never a "girl power" kind of gal. But as I perused through their website and stumbled upon "Meet our girls!" I found myself in a symbolic garden of hope with beautiful photos of families and their girls, their moms, their stories, how old they were when they were diagnosed, what has helped them, what hasn't, where they were from.... Not only did I become a believer in "girl power" but here I was looking at these flowers - lovely gals - planted all over the country! How could we not be a part of this? I have become a girl power kind of gal who now has a flower power GP2C bumper sticker on the back of my car. The cynical me is gagging right now. But she doesn't much exist anymore...
Throughout May, we want you to meet the incredible moms serving on our Mothers Advisory Board. Today, we welcome Kristy Brooks, GP2C Mothers Advisory Board Member, as a guest blogger. Be sure to watch the video, Juliana's Story, linked below!
And So We Will Continue… We received the news in the mail – a diagnosis of Rett Syndrome for our daughter Juliana. I never thought for a second that it wouldn’t be positive or I wouldn’t have opened the letter alone. I was six months pregnant with our second child at the time and my knees literally buckled from under me when I read the words.
I sat on the kitchen floor, crying all by myself. Why did I open it?? It only meant that I would now be the bearer of bad news. I should have waited, but I never thought it would be true. The only way to describe how I felt that day is absolute nightmare. I just kept repeating in my head – ‘THIS CAN’T BE TRUE . . . THIS CAN’T BE TRUE. Please let me wake up from this nightmare.'
To say that the days and weeks that followed were hard would be a huge understatement. Aside from the initial horror of the diagnosis, we now had to figure out how to tell everyone. No one knew what Rett Syndrome was, so having to explain every last painful detail over and over again was torture. After the pain and the hurt came the anger, the “Why me?” the anger at God. Not a good place to be. So we started looking for answers and trying to accept what this would mean for our lives - all while trying to maintain a job and get ready for the birth of our second daughter.
We survived the next couple of months but quickly realized we couldn’t live like this. We couldn’t just take this sitting down. There had to be something we could do.
Enter Girl Power 2 Cure.
Girl Power gave us hope again. It made us realize that this didn’t have to be a death sentence. You can’t understand the comfort in knowing that you are not alone. Our family was wonderful, but no one REALLY understands what you are going through like another Rett Parent. Girl Power gives us hope in all the research that is being done and all the potential it holds.
We quickly assembled a team, affectionately called 'Juliana’s Dream Team.' It is a team of everyone who loves her. And the magical thing is that the Dream Team just keeps growing. Over the last 2 ½ years, we have held 2 golf tournaments, 2 spaghetti dinners, one wine tasting and countless other garage sales and donation jars. And we aren’t stopping there.
We plan to keep going until Juliana gets her cure.
To see all the progress Juliana has made, against so many odds, gives us all so much motivation to find a cure.
And the motivation for all of this? An amazing little girl whose smile literally recharges you. Everyone who meets Juliana is instantly drawn to her. She has very special qualities and although she can’t talk with words, she grabs hold of your heart and you feel this instant connection to her. I actually feel so lucky and blessed to have this amazing child. She inspires so many people - I can’t believe that she’s mine.
If I could change things and take Rett away I would do it in a heartbeat, but I’ve stopped asking “Why Me?” in a negative way and started asking “Why me?” in a special way. What did God see in me to give me such a special angel? We still have our rough days but thankfully the good far outweigh the bad.
So we will continue.
Juliana will continue to teach lessons in love, compassion and patience. And we will continue to care for her and love her in the best way we can all while we continue the mission of finding her a cure. Keep an eye on my girl. She has and will continue to do amazing things in her lifetime!
Tuesday, March 8, 2011
Today is the 100th Anniversary of International Women's Day. It all started in Europe in 1911 when millions rallied to celebrate. It is hard to imagine getting together millions of people in 1911 without Facebook, Blogs and the Internet.
This leads me to two thoughts. And, yes, they will certainly be tied to Rett Syndrome.
First: I was reading a medical blog the other day which had one sentence that really struck me. It was not anything new, it was just the way it was stated... and perhaps there was something about my state of mind when I read it:
"The only known risk factor for getting Rett Syndrome is being female." Wow. That is a tough one to swallow. Think about how random this is.
Every now and then I calculate how many girls have been born with Rett Syndrome since our daughter Sarah was born. As of today (going by 18 born each day) we are at 66,366. 66,366 girls Sarah's age who cannot grow up to be the women they deserve to be. And that figure doesn't even come close to the total which reaches close to half a million.
1,206 born just in 2011 so far.
Second: We need to find all of these girls. Women around the world need to know about them. We can stop this. For all the girls and women reading this today, do something to push us closer to a cure. Every little bit counts.
If one million people can gather in 1911 without mass communication, certainly we can keep sounding the alarm about Rett Syndrome.
Make today your tipping point. If you have not been involved with raising awareness and funds for research, start today. We'd love to have you by our side.
We have an entire section on our website dedicated to HOW TO HELP -- click there now! We need YOUR POWER to cure Rett Syndrome.
Congratulations to GP2C Youth Volunteer Rachel Dalton! She has been recognized as an "Everyday Young Hero" by YSA for her commitment to raising community awareness about Rett Syndrome and to finding a cure!
Rachel has been an outstanding volunteer for GP2C. Last Fall, she organized friends and family to make baked goods for a bake sale and raised over $800!
She can't do this. She can't do that... It can be a real downer for Rett Girls every day. But... only if we let it be that way.
To kick off the New Year with an empowering attitude, Girl Power 2 Cure is launching a new YouTube channel called RETT WE CAN!
Here is why we created this channel (inspired my Rett mom Terri Vejrosta!)
* to share the "Rett" experience by showing the things Rett Girls CAN DO * to put an empowering, positive, human face to Rett Girls * to have a place to send therapists, family members, volunteers, and donors to see Rett Girls staying strong * to have all the great YouTube videos ORGANIZED by category* * to get inspired * to explore different things to work towards with Rett Girls * to educate others about Rett Syndrome
Please know that there will be a wide spectrum of girls featured on the site. Not all girls will be able to everything here. For instance, I know my Sarah probably will never water ski like Jade, but others just might!
The point is to always reach FORWARD. Always explore and challenge and keep Rett Girls active. All of us have a role to help bring these girls to their full potential. Each girl's potential will be different, but we want to make sure everyone stays inspired to believe...and have the tools to inspire everyone who lives or works with a Rett Girl.
* Our current categories are Walking, Hand Function, Eye Gaze, Communication and Expression, Sports and Adventure, Therapies.
NOTE: When you visit the site and see the category listings, click on one...then you will see all the videos under that category. Remember to send us suggestions and even category recommendations! We want you all to be a part of making RETT WE CAN a great resource!
2011 is a NEW YEAR! Best wishes and strength to all! - Ingrid
